Thursday, April 16, 2009

Update on Isaiah - Anaphylaxis

I forgot to mention last night that the GI specialist was able to confirm that Isaiah does not have eosinophilic esophagitis. That's good, but still doesn't explain a lot of Isaiah's symptoms. The doctor took several biopsies from both procedures, which should be back in about a week (we have an appointment set up to discuss the results).

Isaiah is doing well this morning - he's still a little pale and tired, but mostly back to normal. Thanks so much for your prayers. Things could have been much worse, but God has protected Isaiah from a much worse reaction and has brought him through a pretty bad reaction. God has blessed this little man, and continues to show us how His joy, peace, and faithfulness persists in Isaiah - what an amazing God we serve!!! =0)

Isaiah's procedures went well yesterday - really well. No anaphylaxis in the OR - further explanation of this will follow. He flushed in the OR prep room, had spots that would randomly show up and then go away, but he did sooooo good. I am so thankful that he did not anaphylax yesterday.

During the prep for the procedures, there were a few times where I was wondering if we were going to get through all of this without at least a temper tantrum. Isaiah never ceases to amaze me - he didn't cry, didn't ask or beg for food, and just did a wonderful job taking all the laxitives.

I am also so proud of the little guy! He didn't flinch when they gave him the IV - not one bit. He even watched them put it in!!! He even did great when they took him back to the OR - didn't cry or anything.

Even in recovery, Isaiah did so well. It took longer than expected (the recovery portion), but he was also given anesthesia that is not typical for the procedures he had. He even showed us his feisty side, pulling out the breathing tube! =0) He really wanted that pacifier!!! =0)

We stayed in Orlando last night - just in case Isaiah had a delayed reaction. Isaiah was not admitted for an overnight stay (hospitals and the lack of food safe for Isaiah makes hospital stays difficult), so we had to stay in a hotel nearby (they would have admitted him if we hadn't stayed close by). He did so well last night - eating and drinking without any difficulty. He even did well this morning and afternoon. He was back to his spunky self. =0)

However, this evening, Isaiah had an anaphylaxis episode. We thought he was fine - completely out of danger, and he anaphylaxed. Even after the Epi, Isaiah was extremely lethargic. In fact, they thought about admitting him tonight (or this morning), but again . . . the whole lack of food thing. I think I am going to put a suggestion in the hospitals box about bringing in food safe for people like Isaiah. Anyway, Isaiah was given some fluids, more steroids, more benadryl, and something to help with nausea. Right now, he's okay. He's really pale and has the random spots that come and go (and he flushes wherever you touch him right now), but he's doing much better.

The ER doctor said that his reaction was more than likely because of something he received yesterday - either the versed or the anesthesia. Once the prednisone wore off from yesterday, Isaiah's body responded with anaphylaxis. So, now we have to be vigilant and watch him to see if the same thing will happen when the prednisone wears off from tonight . . . we're going to see the ped and the allergist tomorrow, hopefully we won't have any more issues.

Anyway, I just wanted to let you know what was going on. My brain is so tired from this past week. Easter was a blast! Monday was tiring - laxatives every 20 to 30 minutes can wear a person out! =0} Tuesday was stressful, and today, well, today was just trying. I am so thankful we caught the reaction right at the very beginning - before it got to the point where Isaiah needed more than one Epi. I am also thankful God brought Isaiah through the procedures yesterday and through the episode today. God has really carried us through this - and has shown me how brave and beautiful my little boy really is! =0)

Thank you for your prayers - we felt them. Isaiah and I had so much peace yesterday throughout the procedures. We even had a Christian anesthesiologist who was praying as well (by the way, Arnold Palmer is a wonderful children's hospital)!!!

I do have pictures to post, but I will post them later when my brain wakes up a bit more. =0)

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Isaiah 58:8-9

Then your light will break forth like the dawn,and your healing will quickly appear;then your righteousness will go before you,and the glory of the LORD will be your rear guard.Then you will call, and the LORD will answer;you will cry for help, and he will say, "Here am I".

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Isaiah-isms =0)

This is our new addition to the page - Isaiah-isms. He can say some pretty funny things . . . it's a tad scary, all those thoughts that have been locked up for so long . . . . =0) Here are a few of the things Isaiah has been saying lately . . .

"You can't be sad when you poop, Mom!"

"I got a chicken-cups, eeep!" (hiccups)

"I not go to bed ta-day!"

"To if-fibiddy an beyon!" (thanks, Buzz Lightyear!)

"I can't wanna do it."

"Take it-ta da top and cha-cha-cha!" =0) (I have no idea where that came from, but he's too cute when he says it!) =0)

"La hoo-hah-rah-cha, la hoo-hah-rah-cha. An he needs a get a kit-tar!" (kit-tar = guitar) =0)

"Dri-ben tuh Tord's tar-by!" (I'm in the Lord's army . . .)

"Aaaaaaagh! You're a muggering me!" =0)

"Lord Jesus to play!" ("Lord, teach us to pray.") =0)

"I hab wubed you with an eber-asting wub." ("I have loved you with an everlasting love.") =0)

Isaiah

In addition to severe food and environmental allergies, Isaiah has also been diagnosed with systemic mastocytosis. The combination of the two is unusual and seem to irritate each other - the allergic reactions are are worse because of the masto, and the masto reactions are worse because of the allergies.

A little about Mastocytosis . . .

Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body. It can affect just the skin or it can also affect internal organs such as the stomach, lungs, and intestines. Instead of being an autoimmune disease, mastocytosis is considered to be a myeloproliferative disease in that the bone marrow is producing too many of a certain type of cell - in this case, mast cells. Some of the possible symptoms of mastocytosis look a lot like food or environmental allergies. A person with mastocytosis may be convinced that they have food allergies but the antibody tests may be negative.

According to FAAN, "an anaphylactic reaction may begin with a tingling sensation, itching, or a metallic taste in the mouth. Other symptoms can include hives, a sensation of warmth, wheezing or other difficulty breathing, coughing, swelling of the mouth and throat area, vomiting, diarrhea, cramping, a drop in blood pressure, and loss of consciousness. These symptoms may begin within several minutes to two hours after exposure to the allergen, but life-threatening reactions may get worse over a period of several hours.

In some reactions, the symptoms go away, only to return two to three hours later. This is called a “biphasic reaction.” Often these second-phase symptoms occur in the respiratory tract and may be more severe than the first-phase symptoms. Studies suggest that biphasic reactions occur in about 20 percent of anaphylactic reactions."

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My Dad (aka Grandpa . . . okay, so he's Ye-Ye)

A little about Waldenstrom's Macroglobulinemia

Waldenstrom's macroglobulinemia is a rare, chronic cancer that is classified as a plasma cell neoplasm. It affects plasma cells, which develop from white blood cells called B-lymphocytes, or B cells.

B cells form in the lymph nodes and the bone marrow, the soft, spongy tissue inside bones. They are an important part of the body's immune (defense) system. Some B cells become plasma cells, which make, store, and release antibodies. Antibodies help the body fight viruses, bacteria, and other foreign substances.

In Waldenstrom's macroglobulinemia, abnormal plasma cells multiply out of control. They invade the bone marrow, lymph nodes, and spleen and produce excessive amounts of an antibody called IgM. Excess IgM in the blood causes hyperviscosity (thickening) of the blood.

Waldenstrom's macroglobulinemia usually occurs in people over age 65, but can occur in younger people. A review of cancer registries in the United States found that the disease is more common among men than women and among whites than blacks.

Some patients do not experience symptoms. Others may have enlarged lymph nodes or spleen, and may experience fatigue, headaches, weight loss, a tendency to bleed easily, visual problems, confusion, dizziness, Alzheimer's-like symptoms, and loss of co-ordination. These symptoms are often due to the thickening of the blood. In extreme cases, the increased concentration of IgM in the blood can lead to heart failure (taken from http://www.iwmf.com/WhatIsWM.htm).